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Hi to all!

Early February 2013 during a trip in Asia I started to feel brief episodes of unsteadiness and loss of balance. After a couple weeks, this sensation of “feeling drunk” or “floating” was no longer temporary as I was feeling it constantly. I went to see an ENT specialist thinking it could be a problem with my middle ear but he found nothing.

After Asia I traveled to Europe in May (4 months later) where I started to feel pain in my arm and leg muscles. It was the kind of pain you’d feel after doing an intense physical workout like weight lifting. This pain would come and go; sometimes I’d feel it just in my left forearm, an hour later it would travel to both my legs then disappear, constantly changing. This lasted for three weeks and hasn’t been back since, thank god!

After researching my symptoms online, I found multiple sclerosis could be one of causes to my troubles. For this reason, I took an appointment in Paris with a neurologist and got an MRI of my brain (See MRI images attached). Unfortunately, the results were not as I had hoped and the images showed anomalies (lesions). The doctor didn’t have much to say without doing additional tests. On the report, he concluded by saying “These lesions are not very specific because of their number (4) and the absence of any lesion on the posterior fossa.”

I’m back in Canada now and I need to follow up by doing more tests: MRIs + lumbar puncture etc… I’m worried that the health care system in Canada won’t properly take care of me. Its 2-3 months to get an appointment with a neurologist! WHAT! It was 1 week in France! The waiting time for an MRI in public hospitals is 8 months minimum or you need to pay 700$. So I just signed up for a personal health insurance but I had to lie on the form about my symptoms otherwise they would have excluded any expenses related to my condition. I hope they don’t find out I had these symptoms before signing up! It’s when you really need help that it’s the hardest to get! That’s crazy!

The good news is that my symptoms currently are very minimal as I just feel minor unsteadiness. Some days I feel totally fine! I’ve learnt to live with my tinnitus which started 4 years ago and I could learn to live with my current condition if it doesn’t get worst but I might just be in remission waiting for a relapse. I just spent more than a year travelling the world, I’m getting married next year, we bought a house and are thinking of having children soon, I have so much to do and so many projects on my mind and I’m only 32. This is a seriously debilitating illness; 60% of people can no longer walk 20 years after onset.

The neurologist in France mentioned that he had seen these types of lesions just disappear. I’m an optimistic person and I want to think this is possible. I’m also realistic and my symptoms and initial MRI do point towards MS. What else could it be? Is there any other disease that could be responsible? I’m slowly preparing myself for a diagnostic of MS and I’m scared that it stops me from living a “normal” life.

I read a lot of information about multiple sclerosis and lots of people are living well with this disease.
-Have you heard of brain lesions just disappearing? I hope I’m not being too optimistic.
-Are you familiar reading MRIs? Do you have an opinion on the MRIs I’ve attached?
-Have you been diagnosed with MS and you are living well with it? Do you have a secret trick to manage?
-Just in case, I’ve taken a complementary health insurance and a 20 year life insurance so if I get bad news and something happens to me, my loved ones and I can get some extra help. These will be a LOT harder to get after a diagnostic. Has anyone else done this after feeling symptoms? I have NOT yet seen any doctors in Canada about my symptoms.

Once my health insurance approves me I’ll go see a general practitioner to get a prescription for a neurologist who’ll prescribe additional tests and we’ll take it from there. I’ll update this post with my results.

Thanks to all for your support!
Alex. There is quite a bit you need to learn about MS before you jump to conclusions. There are 4 types of MS. 85% of people are diagnosed with relapsing/ remitting MS and can have it forever. Not everyone progresses...

Those who do, can move on to another form of MS and there are no meds available for those types of MS- these are progressive types of the disease, however they are not fatal.

You wrote "Iím only 32. This is a seriously debilitating illness; 60% of people can no longer walk 20 years after onset."

Where did you read this fun fact? I would suggest you STOP reading stories on the net.....none of it is monitored/ censored, and 95% of it isnt true- and start over.

I was dx almost 9 years ago. In that time, Ive gotten 3 advanced degrees, have tripled my income and work 70 hours a week all the while going to school full time and graduating valedictorian of my class twice. Its not seriously debilitating- it CAN affect your gait or your coordination, but seriously debilitating? no.

No one can tell you what is going on with your MRIs, we are not doctors, nor are we allowed to read them- however, as a person living with MS, I can tell you that its not the end of the world and stops me from doing nothing. As a person who has over 100 lesions on my brain scan- I can tell you that Im still 100% capable of getting As in school, making money and living normally. And, I have black holes on my brain too- where too many lesions formed and no tissue was able to support the damage, so it became a hole. No big deal. my brain wired itself in other ways to do what it needs to do. The brain is an amazing thing. I will tell you that the doctor in paris was wrong- lesions do NOT dissappear. They either fall thru the holes and become a new type of lesion, a black hole, or they scar over and remain there forever. Only active lesions cause symptoms. Those are lesions which glow white under contrasting fluid on a MRI. Was your MRI performed with and without contrast? If it wasn't, it wasn't a good MRI for testing.

Life insurance gets very expensive when you have MS because you become a higher risk. No one can guarantee what the disease will or wont do to a person- in the US, health insurance also gets more expensive. You lied on your application? That's not good. THEY absolutely WILL find out that you have seen other doctors in other places, and your application will probably be denied...don't ever lie on an application~ its easier to tell the truth (and more ethical) and until you have a diagnosis, you're not in the high risk arena anyway....once you get the diagnosis, its not impossible to get coverage, but it is more expensive (at least here in the US).

wishing you the best....but also hoping youll ask us questions and let us help educate you on the disease so you dont jump to conclusions about where your life is heading. You can live a perfectly normal life with MS and have exactly what you described you and your future wife wish to have and just as easily as that- this might not be MS. 1:400 chance...remember that. So many things show up like MS in the beginning- its one of the hardest disesases to diagnose just for that reason.

Hang in there and best to you..
Hi to all!

I’m 32 and 9 months ago in February 2013 I started to have dizzy spells which became almost constant. I would describe it as some kind of disequilibrium, a feeling of drunkenness like I had too much alcohol to drink but sober.

In addition, a couple months later in April 2013 I started to have occasional pain in my muscles, legs and/or arms. The muscle pain is very localised in one random spot and can be replicated by stabbing your arm or leg really hard with your finger for example. I don’t know if it’s really pain, maybe more soreness like after an intense workout, weight lifting etc…

In March I was in Europe and I saw an ENT which couldn’t find anything wrong. Then I saw a Neurologist and got an MRI which revealed 4 white matter lesions (See

I returned to Canada in May and since, I’ve been randomly feeling all sorts of other weird symptoms which are mostly temporary and more inconvenient than debilitating. For example I sometimes felt I had trouble breathing like someone had their hand around my throat and were tightening their grip. That would last a couple hours. A couple times every month I’d have this really strong and sharp pain only in my left eye. Also, some minimal tingling in legs + floaters in my eyes + feeling I’m searching for my words (Tip of the tongue phenomenon) + stiffness in my neck + some kind of weird numb feeling at the tip of my left toe.

I sometimes have headaches but not more than before. I don’t believe I’ve ever had vision problems apart from the pain in my left eye, definitely no optic neuritis. I do sometimes need a couple seconds for my vision to focus on a word or close objects (Presbyopia?). I bike 50 minutes every day to go to work and I have plenty of energy. I sleep relatively well BUT I think my symptoms worsen if I don’t get a good 8 hours of sleep.

In Canada, I saw an internist doctor and spent an hour talking about all my symptoms. He says I can’t have Lyme disease because I’ve had no rash, no joint problem, no fever, no flu like symptoms. His conclusion was that I have an anxiety disorder. He says brain lesions are common and might not be the cause for my symptoms.

In September I saw my first Canadian Neurologist who spent an hour questioning and testing me, Babinski sign etc. Nothing abnormal. I got a second MRI with contrast this time. The lesions have not changed in 5 months and nothing alarming to note with the gadolinium. That’s pretty good news!

When I was 20 years old, I often went to raves and after-hour parties and took a couple different drugs. Over a period of 12 months, I must have taken 20 . I know it’s bad, I regret it and would NEVER want my kids to do this! I found a study that shows 0.5% (1 in 200) young adults have brain lesions. That’s a lot! Scientists found a strong correlation between brain white matter hyperintensities (WMH) and . I couldn’t believe it when I read this! My lesions could have been caused by drugs and absolutely not related to any demyelinating disease! That’s kind of good news!

I’ve been a heavy smoker for 10 years and quit a year ago. Smoking could cause white matter lesions? Don’t remember if I read this somewhere.

There are two conditions I’d like to get tested for: “chronic subjective dizziness” and “Vertical Heterophoria Syndrome”. In both cases, muscle pain is not part of the symptoms but that could be caused by anxiety which could be caused by one of either condition. It’s amazing to read about all the symptoms anxiety could be responsible for, basically every possible symptom in existence! Only thing is I don’t feel stressed, I have a pretty good and stable life. Can you have an anxiety disorder without feeling anxious?

I got in touch with “Vision Specialists of Michigan” regarding Vertical Heterophoria Syndrome and I have high hopes this is what I could have! My eyes could simply be misaligned and I’d need a new pair of glasses which include correcting prisms. I scored high on their questionnaire and when I have symptoms and cover one of my eyes (so both eyes don’t need to focus), I really do feel the symptoms diminishing. I thought the placebo effect might be responsible but I tried it 3 times and the results are very similar! I’m going to an optometrist to get this tested soon. If I want to see an ophthalmologist, it’ll take 6 months or more in Canada!

I want to get an electronystagmography (ENG) which is a diagnostic test to record involuntary movements of the eye caused by nystagmus. It can diagnose the cause of dizziness by testing the vestibular system. This could truly help diagnose my main symptom which is dizziness. I need a referral from an ENT.

For some, migraines cause pretty nasty symptoms and can also cause lesions. I don’t really have headaches but there are “silent migraines” so that’s also a possibility.

Lyme disease might be the “better” disease to have as it’s curable with antibiotics and can cause all my symptoms.

I’ve been thinking about Multiple Sclerosis quite a bit which could be responsible. Do I have an autoimmune neurologic disorder? I hope not!

Last on my list of possible diagnostic is anxiety which could be the cause to all my misery.

With all these possible diseases and conditions, a healthy lifestyle is always highly recommended. Two months ago I started biking to work (11km a day). I’m starting yoga in 2 weeks. I’m trying to eat healthier and reduce inflammatory foods like red meat, etc…

Some days I feel totally fine (35% of the time) and I never forget to thank my own personal god for a symptom free day. When I feel like crap, I repeat a couple times a day “Please allow my family and I to be healthy…” My mom has lung cancer so she could really use some good voodoo. I’m not religious at all but feeling like someone is watching and listening feels good.

Questions – I’d greatly appreciate your opinions on any of the following:
- What does the muscle pain feel like for Multiple Sclerosis? Soreness like you just did some major exercising? How would you describe MS muscle pain?
- Even though I’ve never had a rash, no joint problem, no fever, no flu like symptoms, could I still have Lyme Disease?
- Can you have an anxiety disorder without feeling anxious?
- Only active lesions that stand out in MRI with contrast can be responsible for symptoms for MS?
- Have you ever tried the electronystagmography (ENG) test?
- Have you ever heard of Vertical Heterophoria? Do you know anyone that’s required prisms to fix an eye misalignment?

Thanks to all! It feels good to be able to talk about it!

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